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Lost in the system 

As a former cancer patient I fear getting sick again, but it’s not the disease I fear, it’s being lost in the system that scares me.”

These words are from Rachael Bull, a contributor to the latest edition of Patient Experience magazine.  We think they should be heard by healthcare providers everywhere.  Imagine being more afraid of the healthcare system than you are of cancer.

Patient experience is often thought of in terms of things like compassion and “patient-centred” care. These things matter, but both patients – and the staff looking after them – are let down when appointments are cancelled, records go astray and “pathways” that look good on paper turn out to be impossible to navigate in practice.

Another contributor - Cancer Mum - has a similar story. As a long term carer for her disabled son, she had to fight for access to his records. But she then found herself with a record containing hundreds of document and consultation entries that had not been indexed and so were useless. 

These are powerful illustrations of why we need to see things from the patient’s point of view. For healthcare professionals, an overly complex system can be exasperating. For patients, it can be life-threatening. 

So it is good to see the NHS Leadership Academy taking matters such as these seriously. Our third contributor, Karl Roberts, talks about the importance of developing patient leaders with the skills and confidence to take their experiences into senior levels of healthcare organisations.

Healthcare systems need to hear from people like Rachael and Cancer Mum. But they also need to embed individual stories in a solid base of evidence. So the magazine includes our usual round-up of the latest research on patient experience and involvement, with summaries to help you get quickly to the information you need.  

You can download the magazine via our website.
Navigating systems…

There is good evidence on how it feels for patients and carers to be lost in complex healthcare systems.

Negotiating the care maze looks at the process of decision-making that people go through when a family member or friend needs full-time care.  In a stroke of creative genius, the authors have also turned carers' testimony into poetry.  

This study looks at how people can become confused by "urgent care" as opposed to "emergency care" services.  Making appropriate choices is not always easy.  

A Canadian report looks at patient journeys across health and care services and asks, "Who is the puzzle maker?"
This just in…
New evidence on all aspects of patient experience and involvement is being published all the time.  Check out our top picks from recent reports:
Ending the Blame Game. The Case For a New Approach to Public Health and Prevention.
A data-driven approach to cancer care.
Getting Carers Connected.
Free resources

Not a subscriber to the Patient Experience Library?  Don't worry - you can still get lots of free stuff from our website!  

Our quarterly Patient Experience magazine carries insightful comment from a range of contributors, as well as our top picks of recent reports on patient experience and patient/public involvement. 

Patient Experience in England is our annual overview of the evidence base, drawing on surveys and research from government bodies, health charities and academic institutions.  The evidence is broken down into manageable chunks, and research findings are grouped under key themes for ease of understanding. 

You can browse our Knowledge Maps to see how patient experience is being reported in your area.  

And if you want to wear your patient experience heart on your sleeve, you can download and print our posters and stick them on your wall.  Better still, post them to the Chief Executive of your local NHS Trust!
Do you know of a stand-out report on patient experience that people in CCG's, PALS teams and local Healthwatch should be reading?  If you do, and you'd like to see it featured in this newsletter, let us know! 
The Patient Experience Library offers unparalleled access to patient insight and experience with over 50,000 documents, including...
  • Patient experience reports from health and care charities and think tanks
  • Guidance on matters such as patient-centred commissioning
  • CQC inspection reports and patient survey results
  • All the reports from the local Healthwatch network
  • Quality Accounts from health service providers
  • Valuable archive materials from bodies such as LINk and the NHS Institute
For details of free services, pay as you go services and subscriptions, click here.
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